What Gave Me the Courage to Tell Others About My Epilepsy

I’ve been searching, probing and pounding away at my psyche, trying to figure out what really made me want to begin telling people about my epilepsy. On the surface, I’ve felt that I finally got angry about the senseless stigma against epilepsy. But why? What sparked it or what was wrong before then that suddenly righted itself?

I felt the stigma when first diagnosed because of my own misconceptions of what “an epileptic” is. This was the ‘70s. It seemed like people with epilepsy were viewed as “less than,” the “other,” “not like me.” Suddenly I was one of them, and rather than change my views of what such people are like, I changed my views of myself. As the decades progressed, so did the outside world. I grew, too, to some extent… but not really. My confounding 20s led to my shaking off of the negatives in my life in my 30s. My 40s brought with them more perspective, motherhood and feeling respected by others. In a sense, I was maturing.

And then there were my 50s. The minute I entered this decade, I felt I could do anything I wanted. Don’t get me wrong. I didn’t think I was infallible, but rather that I could break free of convention — getting a white streak in my hair, painting my toenails purple and the like. Soon, I’ll get a small, discreet tattoo of a moon — purple, of course! The definitions of each distinct decade of my life were all unnecessary constructs I had made up. Nonetheless, I internalized them and, to some extent, shaped my life by them.

Halfway through my 50s, I suddenly felt that coming clean about my epilepsy became part of my “to heck with all of you” attitude. Let’s face it. It was a mid-life crisis. I was in a revolt, and my zeal physiologically felt invigorating, similarly buzzing like the enervating experience when angry. Ah, ha! I had confused the two.

Lo and behold, people whom I told about my epilepsy reacted pretty well — surprised, but accepting, and usually curious to hear more about epilepsy. They didn’t let me down. And in doing so, they unknowingly encouraged me to take one step further.

Beginning to work as a volunteer with the Epilepsy Foundation New England and blogging, I now was becoming an advocate, something I had wanted to do for a long, long time. Epilepsy, in fact, wasn’t making me “lesser.” It was giving me a sense of pride in my rising up against the challenges of our condition and being part of a community whose members all have to do so.

So that’s it. It was an “I’m me, and I’ve been around for too long for anyone to tell me what to do.” All I can say is that I’m glad the Millennial generation has figured this out before waiting five decades. We with epilepsy are not the other. We’re all part of a diverse world, not defined by any one aspect of ourselves, and certainly not by having epilepsy.

I’m blessed with being able to control my tonic-clonic seizures via meds. Nonetheless, I hid my condition for 36 years. Finally tired of the stigma against epilepsy, I began opening up, choosing moments (ideally somewhat casual ones) to tell people I knew well of my epilepsy. The stigma against epilepsy is culturally based, as well as a product of ignorance. It’s up to us, through open discussions and teaching others, to change the perceptions about epilepsy, do away with the stigma. [email protected]